Beauty unseen, unsung

Her family didn't want her, so Alison Lapper grew up in a children's home where kindness was mixed with outright cruelty. Now an artist and the model for Marc Quinn's famous sculpture, she tells her astonishing story - and challenges our ideas of what is beautiful

Body beautiful: the Venus de Milo inspired Alison Lapper to use her own body in her artwork. Photograph: Dan Chung

It was April 8 1965, the day after I was born. My mother lay alone in a small room at the hospital in Burton-upon-Trent. She had been sedated by the hospital staff and couldn't think very clearly. All she knew was that she'd been brought in to have her baby in hospital because it had been in breech position. It had all been very rushed and sudden. Now she lay there feeling limp, her mind foggy with the tranquillisers. She couldn't remember anything about the birth, but she did remember that she had come into hospital to have a baby. Where was the baby now? Why hadn't they brought it in for her to see?

She could hear the sounds of hospital life outside her door and once or twice a nurse came in to check on her. Later in the day a cleaner came in to tidy up and mop the floor. She looked at my mother lying in her hospital bed and noticed that she was awake. "Can you hear all that screaming down the corridor? That's a baby that's just been born. She's in a terrible state. She's got no arms or legs and there's a big red mark all across her face. It's a horrible looking thing. The nurses say she'll die in a day or two, or else be a cabbage for the rest of her life. There's a bit of a panic going on. They don't know what to do. Neither do the doctors. I expect they're waiting for it to die."

Of course, the baby was me, but my mother didn't know that. Not at first.

My mother was released from hospital and a week later went to see her regular GP. She plucked up enough courage to ask the doctor about me. His response was direct and to the point. He told my mother it would be best if I were looked after by the state and that she should put me out of her mind.

So there I was. Alison Lapper, aged one week. With no arms. And my legs had no knees, just the thigh bone ending in my feet, which weren't quite right, either. I looked like a thalidomide child but my actual condition was phocomelia. The On-Line Medical Dictionary says: "A congenital malformation (birth defect) in which the hands and feet are attached to abbreviated arms and legs. The word phocomelia combines phoco-(seal) and melia (limb) to designate a limb like a seal's flipper." Nobody knew what caused it. I was considered to be severely disabled. I hate that phrase with a passion.

Sometime before I was seven weeks old, I was shipped to a children's home where I remained for the whole of my childhood. We were about 250 children with a variety of impairments: thalidomides, spina bifidas, cerebral palsies, limb-deficients, mentally deficients and many other types of impairment, all lumped together on one big residential site. The staff called us "the strange little creatures". By the age of one or two I think we all somehow knew we had been abandoned and, in varying degrees, we were traumatised by the fact. Even though some of the children had parents who visited them from time to time, they weren't necessarily happy occasions.

The nursing staff had been taught that it was not advisable to get close to the children, so they were not very affectionate or loving. Mostly we children looked to each other for friendship. I had two special friends, Peter Hull and Tara Flood. Peter had no legs, just his upper torso and two pointy stumps for arms. He was steadfast and loyal. As an adult he won gold and silver medals for swimming at the Paralympics. Tara had short, truncated legs and arm stumps. She was the "bright one", destined for university and a top-flight career. We became a close-knit trio of adventurers and mischief-makers.

Alban Block, the building where I lived, had two parts: an inner section and an outer section. The inner was warm and had central heating. It was where the more delicate types like the spina bifidas lived. And for us toughies, as we were called, there was the outer part, which didn't have heating and was freezing cold in winter. The toughies were accommodated in large dormitories, 20 or 30 to a room, with our metal cots laid out in rows. Big cots with tall sides, so it was like being in a cage.

About once a week, a group of us would be taken to workshops across the road to be kitted out with artificial arms and legs. I always enjoyed these trips. We were starved of social contact so it was a treat to spend time with the brown-coated, mechanical-engineering wizards in the workshop. They were all men who had obviously played very seriously with their Lego and Meccano sets when they were boys, and were still doing it, only now on a larger scale. The men were less prejudiced about us than most people. We were not a blight on normal society to them, more like a physics problem that could be solved by the correct use of Newton's laws and the right raw materials. It was all very admirable but the final results, the awkward arm substitutes, were ridiculous. It was virtually impossible to use them.

If a stranger had walked into our dining room during a typical mealtime they would have encountered the funniest slapstick routine: some of us chasing the same bit of food round and round a plate without ever getting hold of it; others succeeding in grabbing a piece of something but then whacking themselves in the chin or eye when they tried to lift it to their mouth. By the time I was seven or eight, the authorities had accepted that the experiment wasn't working and more or less gave up asking us to use artificial arms. Instead, a knife and spoon were strapped directly to my stumps. Not all the workshop's experiments were abject failures. They made legs for Tara and myself and, apart from the problem of chafing, they worked quite well.

For the first two and a half years of my life, I think I may have been one of the few children who didn't go home during the holidays. A new nurse, Susannah Child, arrived at the home, warmer and more approachable than the others, and I took to following her about as she did her duties. One day, she asked me if I'd like to go to tea with her. We only went as far as one of the caravans provided on the site for parents who were making an overnight visit, but it was as good as a holiday as far as I was concerned. Soon Sister Child was taking me farther afield on little shopping expeditions.

She shared a house with the deputy matron, Jean Tate, and after a while they asked me if I would like to go on a summer holiday with them on the Norfolk Broads. Of course I said yes.

It was there I met Jean's brother and his family - Hilton and Daphne and their two sons, Simon and Vernon. I immediately took to them and they to me. I spent that Christmas with them and so began a series of holidays. My best visits were in the summer. Hilton's brother, Colin, had a farm of 140 acres. They had 80 Friesian dairy cows and sheep, ducks and turkeys. Daphne would take the boys and me up to the farm and we would join Hilton in the milking parlour. I was fascinated by the farm animals; I had only ever seen cats and dogs at the home.

I was coming up to my fourth birthday in the spring and had been visiting the Tates since I was two and a half. I was completely settled in with them and they were very comfortable with having me. So much so that they made inquiries with the authorities, through Jean, to find out whether they could adopt me. I don't think the authorities at the home had any objection. They knew my mother had given me up at birth and had made no contact since. Of course, the authorities would have to contact my mother because she would be required to sign the adoption papers.

If my mother had signed those papers I would have gone to live in Norfolk with the Tates. My name would be Alison Tate today and I would have had a very different life. Instead, my visits to Norfolk suddenly came to an end. I wasn't given a reason, so I just cried to myself and wondered where the Tates had gone. Later, I found out my mother had stopped the adoption. For some reason that I cannot fathom she chose that moment to step back into my life.

The day we met was a day like any other, a Saturday, and I was crawling about with my friends in the playroom. French doors led on to a concrete courtyard with a grass bank at the end. Sitting on the grass were a group of people I'd never seen before. The next thing I knew, a staff member picked me up, without a word, and took me directly towards the sloping bank and the group of strangers.

The Tates were my parents. I refused to speak any more and scrabbled away as fast and as far as I could. The nurse immediately caught up with me, picked me up and dumped me once more next to the group. My heart was pounding but my body was frozen in panic. I somehow knew this sudden awkward meeting was going to have huge implications for my life. And I didn't like it at all.

The strangers were, in fact, my two grandparents, my sister, Vanessa, and my mother with her new husband, my stepfather, Alan. They put me in their car and took me to Birmingham where my mother and stepfather lived at the very top of a council high-rise building.

My mother. Where do I start? We've never talked about anything properly so I don't really know how she felt about me. This is how a social worker described our relationship in a report some years later: " ... Although Alison spent holidays with her mother and stepfather when she was a child, the relationship was not easy. Mrs Barber had only limited affection for Alison, which was described as a certain admiration mixed with pity and revulsion."

I think that's pretty clear, don't you?

My mother, Veronica Barber, comes from a working-class family in Birmingham. She left school at 15 and worked in the Lucas car components factory as a machinist. She doesn't look like a factory worker, more like a beautician or hairdresser, and she takes a lot of care with her appearance.

I've tried hard to imagine what it must have been like for her, having misshapen little Alison as her daughter, and I can understand that it was not easy. I don't think she knew how to deal with the guilt and pain she must have felt when I was born, and, perhaps inevitably, she coped with all her mental turmoil by transferring some of her self-blaming to blaming me instead.

By the time I was five, I had moved into the lower dorm, which was in another building. The nursing staff looked after us but it was auxiliary staff who supervised us. I don't know anybody who has a good word to say about the time they spent in lower dorm. And why is that? It's simple. The staff abused us. They exploited us. They terrorised us. It's a sickening thing to have to write, but the children who were most impaired and most vulnerable, much more so than me, were the ones they targeted for the worst abuses and mistreatment. I have to admit we were all cowards when it came to defending anyone who was suffering the attentions of those bullies.

There was one auxiliary who was very physically violent. He would often begin his entertainment by play fighting with one of us, and then just step over the line so that it wasn't play any more. What I mean by "stepping over the line" is the point at which his slaps or kicks or punches started to hurt the child. Another of his favourite games was to pick us up and throw us across the room. It was a sort of tossing game with a bit of aiming and hitting the target thrown in. He would stand with one of us in his arms at one end of the playroom then throw us in an arc across to the other side. I suppose the distance must have been 15 or 20 feet. There were some cushions on the far side of the room that he aimed for and we were meant to land on them. Sometimes we did, but most of the time his aim missed the cushions altogether. When that happened we would hit the concrete and lino floor with a crack.

Unfortunately, we couldn't trust the nurses to help us because all the staff colluded with each other. On one occasion we did approach one of the teachers and she tried to intervene. The consequences for us children were typical. The sister in charge of our dorm told us off for telling lies and we all received early bed punishments for a week.

Of course, not all the staff at the children's home were sadists. Some were wonderful and very caring. But many of the younger ones and the unqualified ones didn't give a stuff about us. They seemed to enjoy being cruel.

At the age of 11, I moved up to the senior section at the children's home - upper dorm. The oppressive system of heavy-handed discipline administered by unqualified staff came to an end. I suppose rumours of untoward activities must have drifted up to the higher levels of authority at the home. House mothers were appointed for each dorm. They wanted to make it a more family-like atmosphere. These days, the children's home is a friendly place and the children are very well cared for. However, for us it was too little too late.

My final two years at the home were my best. In my last year, I was made head girl and Tara was my deputy. And we ruled the roost together. My school work improved, as did my self-confidence. I won an external art competition as well as two major school awards. And my mobility was much better since I had an operation on my feet a few years earlier. My parents even came down from Birmingham for Speech Day to see me receive my two school prizes, and I thought I almost saw my mother on the verge of expressing some words of praise. It was a golden time, but it was drawing to a close.

Every child had to leave the home when they reached 16. That was the rule. I had already been there an extra year because of an operation and now that year was up. It was time for me to go. That meant leaving all my friends, my familiar situation, my whole world.

Queen Elizabeth's Foundation for Disabled People had an assessment centre at Banstead, in Surrey. And that's where I was taken next. The centre trained disabled people so that they could live in the outside world on the best possible terms - whether living on our own, in sheltered accommodation, or in an institution, cared for by professional staff.

I didn't like Banstead from the first moment I saw it. It was an institution like my children's home, but somehow blander and duller. I could tell immediately that this was yet another place where the staff exerted power over the residents and bowed and scraped to the hierarchy above them.

There were 30 or 40 disabled young people there, but I wandered around in a daze and spoke to nobody. I soon gained a reputation for being a snob. The staff at Banstead didn't like my attitude, and I was regularly called into one office or another to receive a talking to. Not long after my arrival I became depressed and began to think of only one thing: how I could leave.

I had been in telephone contact with my mother and she knew I was unhappy there. She said that if I hated it so much at Banstead, why didn't I come home to live with her and Alan. I was so low at the time that moving back to my mother's home in Birmingham seemed an appealing possibility. But as I thought about it more, it dawned on me that if I moved back home I wouldn't be able to learn to drive. I wouldn't be able to go to an able-bodied college, and my dream of living an independent life would be over. So I decided to give Banstead another try. My mother told me afterwards: "I will never forgive you for that."

After that, things miraculously changed at Banstead. I started riding horses. I continued my education. The only thing I was good at was art, so I was enrolled in Sutton College of Learning for Adults to do art O-level. It was going to be my first time doing a course in a normal able-bodied institution and I was petrified, but it was a beginning.

I was now 19 years old and on the verge of having something I had told myself was what I'd always wanted. But it scared me. After two years at Banstead they decided I was capable of living independently and my time there came to an end.

When I moved to London - first to a bedsit and then a flat, especially converted for me, in Shepherds Bush - my life completely changed. I quickly shed the persona I had at Banstead. Now I became a carefree spirit who enjoyed every day as a journey of discovery and adventure. It wasn't spectacular or remarkable to an outside eye, but for me it was as if I had been set free from prison. I made my own choices and lived my life according to my own wants and inclinations. I revelled even in everyday events such as going to the local shops and buying groceries.

I first met Francis at the Tara Hotel in London at a Mouth and Foot Painters Association conference. Tara and I went along together. Fran was there helping one of the disabled artists from Lancashire. Each day, after the main business of the conference was over, many of us would sit at the bar and chat and drink until the early hours.

Fran was a tall, strapping lad with a fine Lancashire accent, and one night he and I got talking in the bar. He and his family were from Garstang, near Preston, where he worked as a porter in a hospital. We were part of a large group, but the two of us spent most of the time flirting with each other. People say that I love to flirt, and they are probably right. The atmosphere was certainly very conducive. We were all staying together in a fancy London hotel with time on our hands. And the drink was flowing. Fran was very at ease around my disability and seemed genuinely to like me as a person. I thought he was funny and sweet.

The day after the conference ended, Fran called me and on the first available weekend I went up to see him and his family. I was genuinely attracted to Fran and was flattered that an able-bodied man would want me for a relationship with love and sex. That side of life had always been presented as something not really available to a "crip" - unless they had a relationship with another "crip".

Fran's parents lived in a council house in a little town where everyone knew everybody and I was nervous about meeting them. But Fran's mother was very friendly to me. I didn't know that Fran was seen somewhat as the black sheep of the family and a bit of a loner. I think she was relieved that he had finally found a steady girlfriend, even if she was disabled and half his height.

Although I enjoyed my weekends because I was with Fran, I soon began to hate the travelling, three hours on the train, and eventually Fran decided to move down to London and stay with me in my flat.

After a while, Fran proposed that we get married and, for some reason that is beyond me now to understand, I said yes. We had already been together for two years and I'd found him to be considerate and kind. He made me laugh, too. The fact that I was ambitious for myself and wanted to have a successful career didn't seem like too much of a stumbling block at that moment. He was the opposite of me in that respect. He was happy to have a steady, ordinary job with no particular career prospects. He liked to stay at home and drink beer and watch The A-Team on television. He was my first boyfriend and I really thought there weren't likely to be any others.

The wedding day was a bit of a blur. I do remember how different Fran's family seemed compared with mine. My mother and Vanessa were turned out like two prize-winning models from the hair and beauty magazine annual awards. I admit that I felt a certain pride in relation to my mother. I was showing her that I, too, could find a man and get married, just like any other normal girl.

Much later, Fran and I slipped away and got a taxi back to the hotel where we were staying. We took the lift to our room, but when Fran had shut the door behind him, he turned to me with an odd expression on his face. "You're mine now and you'll do as I tell you!" he said in his broad Lancashire accent. It took me a second to realise he wasn't joking. And that was when the relationship changed.

He didn't want me to go to college. He didn't like me going out. He didn't like my friends and didn't like it when I went out with them. After a few months I went to see a marriage guidance counsellor, but Fran refused point blank to come with me to any of the appointments.

One night, he sat me on the kitchen work surface and started to slowly pull me off by my feet. Fran is over six feet tall and as strong as an ox, and there was absolutely nothing I could do to stop him. He was laughing and saying if he pulled much farther I'd fall and smash my head on the floor. I was terrified. He kept pulling me farther and farther, an inch at a time, but then he made the mistake of coming close to taunt me. I sank my teeth into his shoulder and hung on like a terrier. Although my teeth were clenched I managed to say, "If you don't put me down right now I'm going to bite even harder!" So he put me down. We were both shocked and breathing hard and there was blood all over his shoulder. Fran was stunned that I'd retaliated. And furious. I was always scared of him after that and I couldn't love someone I was scared of. It made me feel too physically vulnerable. I had trusted Fran and now that trust was gone.

In the end, I knew the only way to move forward would be to file for divorce.

Nurse Shepherd, from the children's home, says that I started playing about with paints and brushes, using my feet, when I was three. It was my favourite occupation. By the time I was 16 I had won an art competition and there was an article about it in the local paper. Someone at the Mouth and Foot Painters Association read it and the head of the British Association, Charles Fowler, came down to see me at the home. I must have made a good impression because he invited me to become a student member, and so began my long association with the MFPA. Student membership meant that I received a small amount of money each month to be used for buying paints and artist's materials. Membership was a great opportunity for me and in later years provided me with my basic income and security. It still does.

The MFPA required us to create paintings that could be made into Christmas cards and sold. That's what provided their members with an income. At the time, I was mainly painting figurative pictures: scenes from life and nature depicted in a realistic way. It was exactly the kind of painting they wanted.

When I came to London in 1984 I lost no time in enrolling at art college. I began to think I might be able to develop a career for myself as a fine artist and move beyond just being a disabled person who could hold a brush with her mouth.

By the time I was 25, I had an A-level in art and had done about as many courses as it was possible to do. Someone suggested I do a degree - at the art school at the University of Brighton. I liked the idea, but there was only one problem: would they accept me? I think my impassioned pleas won them over.

The art school assigned me three or four tutors who saw me for tutorials every two or three weeks. Apart from that, I could choose for myself what direction I wanted to take as an artist.

When I enrolled in various life drawing classes there was a great variety in the shape and size of bodies, but never anyone disabled. So over time I came to focus entirely on able-bodied subjects for my life painting, which I loved doing. My studio area was covered in them. I didn't think anything of it. Then, about halfway through my second term, one of the art tutors, Madeleine Strindberg, was looking at all the work I'd done and said, "I think you paint all these pictures of beautiful people because you don't want to face how you look, and who you really are." I was stunned. It felt like a personal attack. I had come to university to study art, not to be psychoanalysed and criticised for my choice of subject.

After she left, I sat down and thought about it and realised it was true. I had never really looked deeply at who I was and maybe she had made me aware of something that was significant and important.

At the time, I viewed myself as a kind of happy, funny Alison. I was different and, obviously, I knew how I was different, but it wasn't something that I'd really gone into in any depth. There didn't seem any point. But her remark continued to bother me. I went off to the art library in a restless mood and began aimlessly flicking through books, using my nose and mouth to turn the pages. And then one particular book I was looking at fell open at a photograph of the Venus de Milo. It showed a white marble statue, in the ancient Greek style, of a woman with both her arms missing. There was a flash of recognition - hey, that's me! That moment was the starting point of the journey I am still on today, looking at my own body and how I feel about myself, and how others feel about me.

I cleared away all my life drawings and embarked on a new project. I involved many of my friends, asking them to help me make modrock casts of my body. Modrock is like plaster of Paris but dries much more quickly. We did it bit by bit, in segments, because if we'd done the whole of me in one go they would never have got me out. By halfway through my second year, I had a whole wall filled with plaster fragments of my body. I used to sit in my studio looking at them and thinking, "God, you're not ... yes, you're different, but you're not that different. Your torso's still made up like a torso." My hips were a bit odd, and my legs, but on the whole it all seemed quite beautiful in its own right. It was a real revelation for me. I thought, wow, you look pretty good here, girl.

I graduated from Brighton University with a first in 1993 at the age of 28. I had put together a final year degree show and the Mouth and Foot Painters Association made me a full member. It was a significant moment. It meant that for the first time in my life I had a real income.

I continued my painting and enjoyed living in my new home, which I'd been able to buy with a mortgage, only a block from the beach. I made new friends in Shoreham and was coasting along happily when two events took place that changed my life. The first was the offer of an exhibition of my own artwork at the Fabrica Gallery in Brighton.

The second big event in my life was even more significant. I had been pregnant in my 20s, had miscarried four times and had always assumed that becoming a mother was not a possibility for me. But when I became pregnant again in April 1999 I knew I wasn't going to miscarry. I was very fit and healthy and everything in my body and brain felt right.

Although my boyfriend was not the love of my life, I did think we could make something long-lasting from our relationship. But I had noticed that he preferred to express his fondness for me behind closed doors and had difficulties with it when we were in public. How was he going to respond when I said I was pregnant? I had a gut feeling that he wouldn't be happy about the news: he was already a divorcee and a long-distance father to his other children. Still, I did not expect him to rant and rave as he did. He stuck rigidly to his point of view: he absolutely did not want this baby. I almost agreed to his demand that we terminate the pregnancy. I thought he might be right. How would I support and look after a baby on my own as a single mother?

I had thought long and hard about the possibility that my baby would be limb-deficient like myself, but I was told that the chances of that happening would be as low as 5%. In any case, I'd come to the conclusion that if the baby was impaired in any way there was no one better in the world to understand its needs and look after it.

When my baby boy was born I was euphoric. He was healthy, he was cute, he was a blessed miracle. Parys is now five years old, and we've been through a lot together. I am the only person who has been constantly in his life since he was born. My disability hasn't ever created a barrier between us, but if the children at school tease him or make negative comments about his mother he may find it hard to deal with. It makes me nervous at times, but I know we'll get through it and come out smiling. We always have.

I was four and a half months pregnant when the Fabrica Gallery mounted an exhibition of my work. The gallery was a converted church in Brighton. I had filled the place with photographs of myself at various stages in my life - from babyhood to adulthood. I had also included recent work, which consisted of collages featuring my nude body and other elements like flowers and angel wings. I was still trying to explore and depict my own form in a way that would allow able-bodied people to come to terms with what I looked like. I wanted them to have a sense of my journey towards self-acceptance and, perhaps, experience the first intimations of an idea that disability could be artistic, and even - this was a long shot - beautiful.

It was January 1999 when I received a phone call from an artist called Marc Quinn. I had been expecting him to ring because Pete Hull had been modelling for a series of statues that Marc had been creating - all of disabled people - and he'd suggested that I'd be a good subject. I was extremely suspicious. However, when we talked I realised Marc wasn't interested in disability in the way most people wanted to depict it. He wasn't pitying or moralising - I knew it wasn't a freak show or some kind of weird sexual focus that he was aiming at.

He said that old sculptures where the limbs have already fallen off through the wear and tear of time have come to receive an unconditional acceptance of their beauty. He wanted to make equally beautiful sculptures of people who had been born naturally without limbs. What was the difference?

He convinced me, but I was feeling desperately ill at the time. I said I was sorry but I couldn't do any sitting for him. And that was that.

Many months went by and, out of the blue, Marc phoned me again. He asked how I was and whether I would be interested in modelling for a statue. I gave a half-chuckle and told him there was no point in sculpting me now since I was nearly seven months pregnant. His reply surprised me and is typical of his open-minded and fresh attitude. "That's even better!" he said.

This is crazy, I thought. I was feeling very heavy and the baby inside me was putting a great strain on my back. It was almost impossible for me to walk any more without toppling over. But his enthusiasm was persuasive. We talked some more about his approach and the ideas behind the creation of the statue. I saw that Marc was a kindred spirit. I had been working with my own naked body for many years as part of my creative output. He had also used his naked body as part of his work.

So I agreed to model for the statue that Marc wanted to make.

It was a cold winter's day in late November. Marc sent a car down to Shoreham for me and I was driven up to London for the cast to be made. First, they covered every square inch of my body with Vaseline, which made me feel cold. Then they smeared on the wet plaster bandage, layer by layer. They did the front part of my torso first, then my legs, my back and, finally, my neck and head. The whole process took many hours and during most of it I could only drink liquids. By the end, hundreds of measurements and photographs had been taken to make sure that the final result was as perfect as possible.

· This is an edited extract from My Life In My Hands by Alison Lapper with Guy Feldman, to be published by Simon & Schuster on September 5, price £12.99.

more on this story

Emine Saner: Alison Lapper was made famous by Marc Quinn's three metre-high statue of her pregnant. This week she was awarded an honorary doctorate, and was called a 'titan of the human spirit'. Here she talks art, sons and coalition cuts